Disease-Modifying Therapies for Sickle Cell Disease: Decisional Needs and Supports Among Adolescents and Young Adults
Notice bibliographique
Résumé
Introduction: Adolescents and young adults (AYAs) with sickle cell disease (SCD) often experience significant challenges in disease management. Hydroxyurea and several newer disease-modifying therapies have demonstrated health benefits; however, uptake of these therapies remains suboptimal. Shared decision-making is one promising solution to addressing barriers in uptake and to improve health outcomes for AYAs with SCD. A thorough understanding of AYA's decisional needs can guide the development of tailored decisional supports and promote shared decision-making. Informed by the Ottawa Decision Support Framework, this study aimed to examine decisional needs and supports reported by AYAs with SCD, their caregivers, and SCD healthcare providers. Methods: Semi-structured qualitative interviews were conducted with AYAs ages 15-25 years with SCD ( n=14) and caregivers of AYAs with SCD ( n=11) receiving care at two hospitals in the mid-Atlantic region of the US. Qualitative data were also obtained through online crowdsourcing with SCD providers across the US ( n=40). Most AYAs (93%) identified as non-Hispanic Black ( M age=21 years, 57% male) and had SS genotype (79%). Most caregivers were female (80%) and all identified as non-Hispanic Black (100%). About two-thirds of healthcare providers were female (65%) and non-Hispanic White (65.0%), with an average of 14.8 years in practice ( range=2-57 years). Thematic and descriptive content analyses were used to summarize perspectives on decisional needs and supports regarding disease-modifying therapies. Adequate inter-rater reliability (Cohen's Kappas > .80) and thematic saturation were achieved. Results: AYAs and caregivers reported needing six areas of support when deciding on disease-modifying therapies: resolving decisional conflicts, gaining knowledge, clarifying expectations, garnering supports and resources, navigating complexities in the decision, and addressing other personal concerns. Families reported receiving supports from providers that facilitated their decision-making by helping them: gain knowledge, clarify expectations, address other personal concerns, build rapport with providers, and resolve unreceptiveness or ambivalence to making a decision. Providers reported offering additional supports targeting: inadequate experience in implementing therapies (e.g., pill swallowing), inadequate health and social services and financial assistance, and inadequate instrumental support (e.g., transportation). Conclusions: This research highlights the needs AYAs and caregivers identify when making decisions about disease-modifying therapies for SCD and the decision supports offered by healthcare providers. Decisional needs reported by families generally corresponded to supports offered by providers. Providers also highlighted additional supports that may be helpful for families (e.g., instrumental supports, such as financial, emotional, and skillset assistance). Findings will inform the development of a shared decision-making intervention for AYAs with SCD, their caregivers, and healthcare providers. Future research is needed to examine which decision supports may be most impactful to promote shared decision-making for disease-modifying therapies.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,004 | 0,007 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,000 |
| Études des sciences et des technologies | 0,003 | 0,001 |
| Communication savante | 0,002 | 0,002 |
| Science ouverte | 0,000 | 0,002 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,002 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».